Haunting melodies and protest songs … Gaelynn Lea with the violin she plays like a cello.
Photograph: Mark Brown

Six weeks before her wedding Gaelynn Lea was dangerously ill in hospital after complications from surgery. She had to persuade the doctors to let her fiance stay overnight, since they weren’t technically married. “And every night he was asleep in this little chair by the bed. Going through this intense experience confirmed a lot of things for me: that he was as good a guy as I could have found. And that you make it through together.”

Lea recovered and the wedding went ahead. A year later, working as a full-time music teacher in her home town of Duluth, Minnesota, and doing regular solo fiddle shows, she decided to write a song inspired by that time. “Side by side,” she wrote, “we face the night.” The result was Someday We’ll Linger in the Sun – a haunting melody that won NPR’s prestigious Tiny Desk song contest, beating more than 6,000 other entries.

Almost overnight Lea went from being a part-time performer to a touring artist. “The prize was to do four gigging trips around the country and after the first one Paul [Lea’s husband and now tour manager] was saying, ‘That was so fun!’ And I said, ‘Can you see yourself doing this full-time?’”

The 34-year-old’s schedule has been busy for the two years since she won Tiny Desk. This month, she is in the UK and Ireland, where her Celtic-inspired music has found an enthusiastic audience. “I have a song called Birdsong that has a singalong part, and the last time I played it in Ireland I finished playing and the audience kept going,” she says with a laugh. “They wouldn’t stop singing!”

Using a looping pedal to create rich, layered accompaniment, Lea’s act explores the gamut of emotions, from love and forgiveness to her fight for disability rights. Lea was born with osteogenesis imperfecta, also known as brittle bone disease. Her bones broke more than 40 times while she was still in the womb; her arms and legs are bent and she uses an electric wheelchair to get around.

She wrote the protest song I Wait as President Trump attempted to dismantle the Affordable Healthcare Act, which could have left those with pre-existing conditions such as Lea unable to get medical care. Lea’s lyrics – “Can you see me, way in the back here?” – are a heartfelt rallying cry for disability rights to be taken seriously throughout the world.

Her own experiences with healthcare have made her a powerful advocate. In her 20s, she suffered a respiratory attack and one doctor told her mother there was nothing to be done for her. “So she got a second opinion. And they gave me the most basic medicine you’d give anyone with those symptoms and recovered right away.The first doctor just took a look at me and thought she’s different and wrote me off.”

Duluth, a pretty town of only 90,000 inhabitants on the shores of Lake Superior, is famed for its cold winters – there’s snow on the ground from November to May – but it is also an artsy place with a surprisingly large music scene. Lea’s parents, a maths teacher and a college secretary, both loved performing: they met while putting on a production of Brigadoon.

For two decades her parents ran a dinner theatre specialising in musicals and comedies. “I grew up at that theatre,” says Lea. “They’d bring mats to rehearsals, and my younger brother and I would sleep till they were finished.” Lea has two more siblings at home, and there was never any question of being left out. “One time they wanted to take a bike ride, so they tied me to the back of my brother’s newspaper rack with twine,” she recalls. “Because we thought that was the safest way to do it!”

When she was 10, an orchestra came to play at Lea’s school, and she told her mother that she wanted to play violin. “She said, ‘If you really want to I’m sure you’ll figure it out’,” says Lea. But it was a supportive music teacher who helped her find her own way around the instrument. “She could have easily said, ‘I don’t know how to help you, you’re just going to have to sing in the choir.’ But we experimented until I found something that worked.

“So I play my violin like a cello and I hold my bow like a bass player. I didn’t realise how big a deal that encouragement was until I started meeting other people with disabilities who had been discouraged from playing. That really breaks my heart.”

At college, Lea discovered folk music, and later one of Duluth’s local legends, Alan Sparhawk of Low, introduced her to using a looping pedal. “He said, ‘You should learn, because someday you’ll play shows by yourself.’ And I said, ‘Haha, yeah right.’”

Her album, Learning How to Stay,which she recorded with a full band, ends with Moments of Bliss, a song that takes a hard look at the reality of long-term relationships. Lea was 22 when she met Paul; she had always feared that her disability would prevent anyone finding her beautiful. When a friend introduced them at an open mic night, they bonded over their love of camping, gardening and cooking.

Lea says she’s learned that, “you’re going to mess up a lot in marriage, so it really boils down to the good moments”. But there’s no one she’d rather share her touring life with. The biggest problems they usually face are the venues that claim to be accessible but aren’t. “I do my own booking now because it was so hard to know what you were walking into. We’d pull up to a gig and it would have a bunch of stairs. I’m like, ‘Didn’t you look at a picture of me?

“And I don’t want to be lifted on to the stage any more because it sends a really negative message to other people – ‘You’ll never be able to do this on your own.’ Green rooms are often in the basement or upstairs, places I can’t get to, so it would be nice if people thought about that, too. The next step would be for other artists to make a stand and say they don’t want to play at places that people can’t get into.”

Society simply hasn’t caught up, says Lea. “We’re good at remembering LGBTQ and people of colour and women in our policies, but we have to stop leaving disabilities out of the conversation.”

She’s been thinking a lot, lately, of how her frightening illness in the weeks before her wedding “ended up being a very important part of our story, and how something so negative ended up being life changing”. It’s time, she believes, for mainstream culture to change the narrative around disability.

“The way people talk about disability is still pretty negative, it’s seen as suffering … ‘Obviously they would wish to be able bodied.’ But now we have Disability Pride, where you don’t have to feel bad about having a disability. I don’t think that’s caught on yet, but it’s cool to be alive at this time when we’re changing the conversation.”